Someone Like Me

I have a confession to make… The charming, positive, all around great gal that metaphorically stands before you, didn’t come easy. Let me back track a minute before the “Ok! No problem, what do I need to do”…. Back to the tears in the car on the highway after leaving the MS clinic (which was an overall positive experience to be honest… Doctor’s are awesome). My Mom saying, “Ashley, this is going be fine, MS research has come so far…. It’s not like it used to be” and me aggressively saying, “I’m allowed to be sad!!!” which was when my mom knew to stare forward, drive and let me have my much needed moment.

I can write to you now, have a positive outlook and really truly be hopeful because of the amount of people (over and above family and friends) that were introduced into my life who had been diagnosed just like me.  We chatted via emails and facebook messages, they assured me “we” would be ok, and to this day, I tear up because of how that statement was written.  “We” I already had a support team of MS warriors around me and as of today, I still haven’t formally met them.

This is why it is SO important to have a voice. Without mine I wouldn’t have met them, people in my life wouldn’t have known of my diagnosis which wouldn’t have triggered them to put me in contact with someone they knew etc etc etc.  So here I was, diagnosed 3 days in and I’m already able to ask much needed questions to individuals who had been living with MS.  I had verbal diarrhea through email, apologizing for potentially asking the same question 3 times… The individuals that came into my life, unexpectedly… who didn’t owe me a thing, took the time to help me.  When my family and friends were trying to lift me up this unexpected support system kicked me in the ass and said “Move it”. Here I am, trying to pay it forward and offer the same support to others.

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I was newly diagnosed with MS in August 2016.. the 11th to be exact, I will never forget that day.  I had been experiencing numbness in my feet for quite sometime that I chalked up to “poor circulation” due to being a major couch potato for last couple of years.  After several months went by, the numbness started to shift to different locations, my legs would feel like I had hundreds of elastics around them at any given time, my left leg would become heavy and I felt like I was stomping, or walking flat foot and I had a few episodes where my abdomen felt extremely tight.  Not the, “I can’t breathe” tight, but it felt like I had a really thick, tight belt on.  Through all of this, I had been to my doctor and had gone for a brain and spine MRI to “rule out MS” and here we are.  I was fortunate enough to be able to see an MS specialist almost immediately after diagnosis and started on medication almost within a month.  Having a good team of Doctors is so crucial.   I am currently taking Rebiff injections 3 times a week.  Side effects are not ideal….. but tolerable and could be much worse.

When I was diagnosed my immediate thoughts were, OK! No problem, so what do I need to do?  I’m going to research the hell out of this and do everything exactly right, or so I thought.  I went into major information overload, MS info being sent my way, articles, blogs, feeds, webinars, doctors…. STOP!!! I couldn’t take it anymore.  I knew people were trying to help and I asked for the help but it was consuming my life with MS and that was exactly what I didn’t want to happen.  One of the first pieces of literature I came across when researching MS was about a Medical Doctor from the  United States who suffered from PPMS and was in a wheelchair with head support.  This caught my eye because the doctor had a photo from the present of her on a bike with the title reading “I put my MS into remission” or something along those lines.  This doctor took the best of the best medicine (according to her) but was just very unlucky.  She mentioned how she turned to food and lifestyle and what’s called the Autoimmune Paleo lifestyle.  I started avidly researching how foods can harm or help heal our bodies and I thought, this Doctor is living proof!  For me personally, these findings, that particular article, brought hope to a very scary world of the unknown that we all call MS.  It doesn’t make everything better as nothing is guaranteed but it gave me another route to look at… more to hope for.

So why did I want to start writing on the Someone Like Me?  I’m glad you asked.  For selfish and unselfish reasons to be honest.  Writing helps me clear my mind, talking about it in silence through written words rather than verbally, helps… AND! I want to be able to help support others who are or were newly diagnosed. Those feeling scared, helpless,hopeless, shocked, whatever the case may be.  My thing is, MS is not going anywhere so how can I turn this into something positive, or at least have positive aspects of it.  Supporting and helping to educate and motivate others.  That’s it.  I am lucky enough to have a health care team that work hand in hand with each other and so I have access to tips and tricks and various info that some may not have access to due to financial reasons, lack of benefits etc.  If I learn something that could be or IS beneficial, I want to share it.  Knowledge is power and the more we know the more questions we can ask our health care teams and make sure we are doing what’s best for us personally.  As I trail off I will remind you that life is uncertain for everyone, not just those with MS.  Symptoms could get progressively worse…..perhaps not.  Months can go by with no symptoms; months can go by with no break in symptoms.  You could also be incredibly healthy, clean bill of health and (knock on wood no one ever experiences this) walk outside and get hit by a car.  Seems dramatic right? Really though….  Nobody knows what tomorrow brings so try not to dwell on the what ifs even though its not always easy.

Cheers

I was diagnosed with RRMS 3 years ago at the age of 31. I had been experiencing numbness on the left side of my body for months and MRIs showed lesions everywhere. I remember feeling relieved for a brief moment because it wasn’t a brain tumor. My relief quickly faded after I asked the Neurologist if I should continue to try to have a baby. (My husband and I had been trying to conceive with no luck for several months). What he told me broke my heart. He believed it was important to start treatment right away but the medication was not safe for pregnant women. Also, many women experience a relapse postpartum and a relapse could affect my ability to look after my baby. I had a tough decision to make.

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GUEST BLOGGER: PASCALE LAVALLÉE

I remember that day five years ago. My dad was with me. We were sitting in the waiting room at the neurologist’s office. The secretary didn’t look very friendly – you know, the kind of person who always looks as though you’re bothering her. There were hundreds of files in the cabinets behind her. All those sick people who needed a file here to get better. I remember feeling uncomfortable to be sitting there in that chair. I felt as if I was taking the place that belonged to someone who really needed to see the doctor. There was nothing wrong with me – no more symptoms at all. It was just fatigue, or maybe the side effects of my birth control pills. So when the neurologist invited me to come into his office, I went in alone. But he suggested that I go get my father from the waiting room.

Then the diagnosis: multiple sclerosis. To me, it sounded like a skin disease. Maybe that explained my problems with eczema. When I turned to my father, I could see that something was wrong, but I knew absolutely nothing about neurology and I had no clue. My father grabbed my hand and gave me a hug – a strong hug, full of love and pain. When the neurologist started to explain the disease to me, I tried to figure out what was so serious about it. I understood that people with the disease often end up in a wheelchair after a few years. OK, fine, I can live with that, but then what? Am I going to die? Am I going to become a vegetable? Am I going to be unable to remember the people I love? No, no and no. So I was still trying to work out what was so bad. The only thing I had in mind was a planned trip to Asia; I told myself that, as long as I could travel, everything would be fine.

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*The following post is one I wrote this past May when I decided to go public (thru the help of social media) about my (then) pending diagnosis of MS.

a·ware·ness
əˈwernəs/
noun
     knowledge or perception of a situation or fact

So, here it goes…This Wednesday, May 27th is World MS Day. As a woman living with the reality of this disease, MS awareness is now something I realize I need to help be a part of. My diagnosis began nearly 2 years ago, and it has been the most terrifying, uplifting, isolating, exciting ride of my life. Each day I grow stronger, making the days when I do falter have less of a lasting impact. I am constantly learning everything I need to know about MS, and THAT is my power.

I have many people to thank for this opportunity who have encouraged me to share my story. One in particular, who is helping me express my journey through photos.  If you, your family member, your spouse, your friend is undergoing a life-changing disease, talk about it. Educate yourself. Because no one should be left to fight on their own.

By: Andrea, guest blogger

con·ver·sa·tion
känvərˈsāSH(ə)n/
noun
       the informal exchange of ideas by spoken words

Talk, discuss, rant, laugh, question, reflect, release, connect, bond, support. Imagine living for a year or a two without speaking to another human being. Imagine finding out the best news ever, and having no one to share that with. Now imagine finding out you have a life-changing condition, and never having the opportunity to share your thoughts, your fears, your hopes, your questions with a person who shares the same. Loneliness and isolation, waiting to be consoled by simple conversation. Talk, discuss, rant, laugh, question, reflect, release, connect, bond, support.

During a conversation one night with a good friend, it suddenly dawned on me that I have never had a conversation with someone who has MS. How bizarre, really. I mean, I have endless conversations with neurologists and MS nurses, but never a conversation with a fellow MSer. Well, once I did have a brief conversation with an older woman with MS who lives in my community. However, that conversation was merely to discover “no, there are no MS support groups in our community at this time.” How is it possible that I, myself, have never noticed that I have not had a moment to talk with and listen to someone fighting the same kind of battle as I am? Not yet had a moment of connection?

I have so many questions and thoughts at this exact moment that are brewing inside of me. Some lean towards fear, some are just plain wonder. I couldn’t imagine having the opportunity to talk with someone who perhaps shares the same thoughts, or not.  Someone whose words have a little more authentic validity than the words of support I hear from the non-MSers who create my wonderful support network. For the record, all of who have a direct impact on the amazing and positive path I am taking with my MS, and none of whom I would ever give up. I hope you know who you are…

So, my question is, who do you talk to? And who wants to talk?